Living With Myasthenia Gravis and Endometriosis

Dana experienced medical gaslighting for the first time when they were just 10 years old. A doctor accused them of making up their symptoms for attention, telling Dana’s mother they needed to be disciplined more. Dana promised themself they wouldn’t go back to the doctor unless they absolutely had to, but progressing symptoms made that an inevitability. It has been an uphill fight for Dana to receive proper care, but at 30 years old they now have two diagnoses of endometriosis and myasthenia gravis (MG).

Myasthenia gravis is an autoimmune condition in which antibodies destroy the communication between nerves and muscle, resulting in weakness of voluntary muscles throughout the body. For about 8 years Dana had been experiencing frightening episodes of extreme weakness, feeling so heavy they would be trapped on the couch for hours or even days at a time. For years doctors completely ignored these symptoms and Dana didn’t know where to turn for help. Finally, they saw a TikTok discussing myasthenia gravis that resonated with their experience, including the common occurrence of drooping eyelids (called ptosis). Dana had been experiencing ptosis, but thought it was just due to exhaustion. When they mentioned this symptom to a neurologist the connection was made to an eventual MG diagnosis.

In this episode of the Major Pain podcast, Dana shares their health journey with myasthenia gravis and endometriosis. They discuss having excision surgery at 26 years old, in which stage 2 and stage 3 endometriosis was discovered. Dana was only diagnosed with MG last year, but has found immediate relief from taking the medication pyridostigmine (mestinon). Unfortunately, muscle weakness has severely affected their work as a cinematographer, since holding heavy camera equipment is challenging. Being forced to spend so much time sitting still has led to new interests, including practicing drag makeup and the art of Tatreez, Palestinian cross stitching.

Find Dana’s cinematography work online at https://www.danashihadah.com/

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